Life with Autism: Finding the Ones Who “Get It”

05.30.17

Timmy was the “typical” energetic, inquisitive three year old. He could sing nursery rhyme songs word for word. He could speak in complete sentences. And
he played constantly with his siblings. He was a thriving little boy so full of light, life and laughter. But like a flip of a switch everything changed.
Most of the words and songs suddenly vanished. Timmy no longer showed interest in playing with others, even his brothers and sisters. Even going out
in public became a nightmare and a tremendous source of stress for Timmy and the entire family. He became very anxious in strange surroundings with
loud and unfamiliar noises and overstimulating sights. These extreme experiences ended in fitful meltdowns that were difficult to handle. Where did
my little boy go? That was the question in this mother’s heart.

Needless to say, I suspected Timmy’s condition was autism months before Timmy received the diagnosis from a developmental pediatrician in Scottsdale, Arizona.
I read everything I could find on the internet as well as publications. In addition, I spoke with local parents with children on the autism spectrum.
With a strong determination, I went into fight mode. However, I also struggled with the grief as well as with disappointment that things may never
go back to the way they were. The dismay that my dreams for my son may never come true was beyond heartbreaking. I wanted my Timmy back. I had lost
control and it was devastating.

Timmy was officially diagnosed with Autism Spectrum Disorder when he was four years old. Shortly afterwards, our family moved from Phoenix, AZ to Ninety
Six, SC which is my childhood hometown. I enrolled the children into the local school district where Timmy was placed in the K4 special education
class. This was the beginning of our journey with autism and the education system. The challenges that accompany a child with ASD can be so overwhelming
in itself. Therefore, when advocating for services through the school is added the stress can become immense. Anxiety, worry, loneliness, depression,
disappointment, anger, and yes the reoccurring grief can wash over you at once like relentless waves. At least that was what I was experiencing.
Needless to say, Timmy is now 10 years old and he is progressing in his own timing. He has regained some speech, has many friends, and can sing
like a bird. He even learned to sing the National Anthem last year and sang it in front of his entire school at Ninety Six Elementary School.

After several years of many ups and downs in my own family’s autism journey, I met an endearing mother with an adult child who is on the autism spectrum.
Chris was a volunteer at the Greenwood County Library where I am currently employed. We became fast friends and began to exchange stories, concerns
and even encourage one another about our children with ASD. Our conversations frequently led to the fact that there was an absence of a support
group in Greenwood County for parents who have loved ones on the autism spectrum. Knowing the need is tremendous for our families in our county,
we stepped out and partnered together to kick off the Greenwood County Autism Support Group in March, 2015.

The focus and vision of the group is to provide a haven of support for parents and other loved ones who live with ASD. Every other month we provide
this platform so individuals can feel free to share their struggles and concerns but also their successes about their children on the spectrum.
It is reassuring to know there are those close by who understand and “get it” when it comes to the unique family dynamics concerning our loved
ones. In addition, we also bring in speakers such as therapists, advocates, service providers, special education teachers, etc. on alternate months
who share their wealth of knowledge and resources to help guide, direct and encourage family members. Our meetings take place every fourth Thursday
of the month at the Greenwood County Library at 6:30 p.m. We also have a Facebook page, Greenwood County Autism Support Group, available for individuals
to join to stay informed about upcoming speakers and meetings. In addition, we have child care provided by staff from the Greenwood Genetic Center
and Project Hope.

In closing, I personally as a parent have finally come to terms with my child and the reality that he has autism. He is still the same little boy I
gave birth to 10 years ago and I have the privilege of watching him become and be all that he is meant to be. We will always have struggles and
challenges. However, the joys and successes will always out number them all. It is a true honor to be a parent of such a special young man. And
I am equally grateful I have found my circle of those individuals who truly “get it”.


By Angela Cogburn

Meet Makayla Gunn

Makayla was diagnosed with Rett Syndrome in April of 2015 at the age of two. At about 18 months, we noticed she had started some repetitive hand motions, and her pediatrician was a little concerned that she did not have many words. She had learned some sign language, and was saying ‘mama’ and ‘dada’, but that was it. Then she suddenly stopped all of that. At her 2 year old check-up, the pediatrician referred us to BabyNet, SC’s early interve...

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